Imagine life as a parent heavily involved in their child’s life, the bread winner in a cut-throat corporate world, active in sports, a frequent traveler and public speaker. And suddenly all of that is taken away from something as simple as a mosquito bite … unable to read to their child, struggling with speech, never fit to return to work, balance too difficult to engage in physical activity and travel suddenly a thing of the past. And yet, due to lack of awareness of this illness or standardized treatment protocols, many patients are left to navigate their own recovery from encephalitis (swelling of the brain).
10 Little-Known Facts About Encephalitis
- Each year, more than 20,000 people get encephalitis in the U.S. and 500,000 worldwide. This is at a rate that doubles and triples other well-known rare illnesses, such as MS, ALS or cystic fibrosis.
- Despite encephalitis being a brain injury that kills 20% of its victims, it can be misdiagnosed with less severe illnesses such as flu or complex migraine and sometimes even stroke or psychosis.
- More than half of survivors are unable to return to work, resulting in a 70% reduction in income. Of the ones who return to the workforce, more than half take a lesser role due to residuals.
- Encephalitis leaves many families in financial ruin with costs that can exceed $85,000 in the first year, including hospital bills at an average $25,000 for the initial visit and required therapies at more than $27,000.
- The more common causes of encephalitis are mosquito bites, the Herpes Simplex virus, head injuries and enteroviruses. However, more than half of the causes are unknown, making it a difficult illness to predict or treat.
- Encephalitis can affect anyone, anytime, anywhere at any age. Healthy people can be impacted by encephalitis – it does not discriminate to include only the immunodepressed.
- There is no cure for encephalitis. Acyclovir has proven to help reduce the swelling for patients with the Herpes Simplex virus as the cause. And in anti-NMDAR encephalitis, some patients respond to immunotherapy or tumor removal.
- There is only one hospital in the U.S. with a specialized program for treating the acute phase of encephalitis, which is Johns Hopkins.
- Like stroke and other brain injuries, encephalitis survivors are challenged with a wide range of long-term residuals, including memory loss, inability to concentrate, migraines, speech disorders, taste/smell changes, blood pressure issues and visual disturbances.
- Patients experience more optimal recoveries when a wide variety of treatments are sought, including cognitive, physical, speech and behavioral therapies.
“Burden of encephalitis-associated hospitalizations in the United States, 1998 −2010”; Neil M. Vora, Robert C. Holman, Jason M. Mehal, et al., Jan 2014
”I’m Not the Me I Remember: Fighting Encephalitis, E Global and Inspire.com Feb 2012
CDC West Nile virus disease cases reported to CDC by state, 1999-2013
CDC American Journal of Tropical Medicine and Hygiene report Feb 2014
“Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study;” Titulaer MJ1, McCracken L, Gabilondo I, Armangué T, Glaser C, et al, Feb 2013; Lancet Neurol
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